Saturday, August 18, 2018

Kiwi As Pets

It is no myth that pets are good for the soul & help relieve stress & isolation.  A long standing tradition is for humans to be empathetic & need some companionship, even if that companion is just waiting for you to feed them in the morning & night... no I am not talking about marriage.

Dan the goat man, from Purakaunui, takes his pet goat Alex around Potato Point to go camping.  Photo: Stephen Jaquiery, full article: Otago Daily Times  Alex Kidd the goat, has been house-trained, car-trained and boat-trained and to Dan not much different than owning a dog.  Often they will head out camping together or go on walks through the town.

NZ has a lot of sheep, they outnumber the population to a large degree to the point NZ often has the highest density of sheep per unit area in the world.  For 130 years, sheep farming was the country's most important agricultural industry, but it was overtaken by dairy farming in 1987.  So having sheep also as pets was a common tradition.  Lambs often display entertaining bouncing skills as they leap and frolic.  So giving them the opportunity to bounce some more & encouraging them with a large sheep sized trampoline is where they get to develop those skills to bouncy castle levels of glee.

The NZ police are increasing the furry fellows with some camera loving companions, including Snickers the cat who has his own instagram account.

As well as Tia who has joined the team in Porirua. Alternative article link: NZ Herald.

 
Who is stepping into big shoes as Constable Elliot, the police guinea pig commanded respect and love of the locals.  Quite appropriate as the police can have stressful jobs and often need to interact with the community they protect. It helps to have a furry greeting at the door.

Snickers manning the front desk.

There are animals you seek to protect & visit often but you do not own them and leave them to be wild but supported.  The Department of Conservation NZ, DoC, offers protection for a variety of native animals across NZ and keeps an eye and open live stream on the albatross nesting colony.

Rangers check the weight & health of the chicks, offer support in times of water stress and record new births to assess the colony health & numbers.  Albatross mothers & fathers take turns with feeding & on the nest with the chick until they are big enough to be on their own.  Shown above is Ranger Mike helping mother and chick cool down during a rather hot period as heat stress could kill them.

Then there are the times when you cannot have a pet, do not feel the need for one but an animal has chosen to attach itself to you as you may be the one needed.


Paul has formed an unlikely bond with Pete the duck when the paradise shelduck laid eyes on him and decided he was the one.  "I don't know what it is, he's quite protective over me," he told The Project.  "If anyone else comes near me, particularly women, he has a go at them."  To which one of the presenters mentioned, "Paradise ducks, well known fact, mate for life. Paul face it, you are married".

It is these kinds of connections I save to show hubby, because humour and an occasional smile is also good for the soul.  So for a mental cuddle, here is how the relationship of one gay goose and a bisexual swan was the loving relationship of a lifetime.

Excerpt from the BBC article, (follow link for further info):
It all started around 1990 when a black swan named Henrietta flew in to the Waimanu lagoon, located in a small town on New Zealand's Kapiti Coast.  Due to a damaged wing, she was unable to fly with the other swans and was often alone until a few years later when a white goose named Thomas arrived.  The duo quickly formed a bond and Thomas was very protective of Henrietta, even scaring off any humans or dogs that came near her.  But after 18 blissful years together, a new young female swan entered the equation and was often spotted with Henrietta. No one thought much of it, assuming that they were both females.  The shocker came when the new swan laid an egg. It turned out that Henrietta was in fact a male swan who had mated with the new female swan.
"It's very hard to establish the gender of mature black swans," said Michael Peryer, the tour guide at the Waikanae Estuary where the lagoon is located.  "So it turned out in fact that Thomas and Henrietta - who was really a Henry - had 18 happy gay years together."  They stayed together for many years after that and Thomas helped raise the signets.  Only when Henry died did Thomas go on to have his own offspring with another goose and when Thomas died he was buried beside his Henry.

 
  BBC Article on Thomas, Henry and Henrietta

Tribute to Thomas life, epitaph by New Zealand performer Pinky Agnew inscribed on his tombstone:

Here lies Thomas, the great-hearted goose,

Nestled near Henry, in their final roost,

Here where they raised young, and found sanctuary,

Somewhere above us, these great souls fly free. 

Friday, August 17, 2018

Working Through the Pain

 "Life is pain, highness. Anyone who tells you differently is selling something." - William Goldman,
The Princess Bride
Long post today and I promise the next one will be fun, short & more joyful.  But for those to find things TLDR, (too long didn't read meme), a key take away is the phrase:  Life is pain and anyone who says differently is lying or trying to sell you something.  Also:  Do not assume you can trust anyone simply because they are in a professional field.  All professionals operate on a scale, much like pain. 


If you couldn't guess by now the Princess Bride was one of my favourite movies.  Much like the Princess Bride I find chronic illness has large amounts of physical pain that can be debilitating and emotional pain as you grieve for what you have lost.  What a cheerful children's movie it was, a comedy with lots of pain and grief experienced by the characters, showing how they survived & pulled through it.  Having both can torment the mind so it needs to be a process of constantly adapting to the next level, like a fish travelling deeper into the water experiencing a higher pressure.  Often at the depths we are at now burns & cuts barely register.  If I hold my hand against metal heated to 180 degrees and I could tell you it would be more annoying than register as really painful, because waiting for burnt skin to heal is a hassle, especially on your hands, whereas the feeling itself is now what I class as mild.

 Deep Sea Anglerfish Predation, by Matt Danko. Where deeper levels of pain do not look pretty.

Yes I have burnt my hands a lot like that. During periods where ME makes hand control really difficult & basic cooking can turn into the most challenging marathon with broken glass strewn along the path representing the number of times I end up accidentally dropping things, cutting myself, burning myself and just taking a really long time to make breakfast, (1 and a half hours of constant mental will to reach the end of making a basic meal, even as simple as toast, regardless of injuries).  Hence during really bad days I often have to forgo eating until recovery to a better level.  Pain can cloud your focus, it can swallow up your energy.  In many ways the experience of pain itself can be worse than the source & feeling of pain.  The mind itself wants to pull away and torments itself by not being able to.  Pain is used as an alert to a state of physical danger or a warning of illness and exertion but it should never be allowed to take control.

It is by will alone I set my mind in motion. - Frank Herbert, Mentat Mantra in Dune

There is a test in Dune in which the lead, Paul, is asked to place his hand inside a box, he is told if he takes it out of the box before the test is over he will be killed.  The test of the Gom Jabbar is a test of will-power and discipline.  Even with one's life at stake, it takes strong self-control to deliberately endure agonizing pain.  The pain caused by his hand being inside the box is a burning white hot heat, searing.  He does not pull away by reflex like many animals would by instinct nor seek to trick his mind to delude himself that pain is something he should control.  It is there, it must be endured, but it is not going to consume the drive & willpower. "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain."

The feeling of the Gom Jabbar Test of Humanity

Having chronic pain from disease or through genetics is a symptom but it is there to be lived with.  Only when it becomes a warning for something more medically serious do we identify it as needing urgent attention.  Similar to grades of allergic reactions, most will be manageable due to known conditions and can sometimes be aided by prescription medication.  Day to day symptom levels can be added to doctor's notes at regular appointments to mark the current status & development (i.e. degeneration of muscles through FSHD, or the effects of severe headaches, joint pain, IBS, allergies, and infections of ME).  But when it gets to the point of anaphylactic shock seeking medical help should be done immediately.

There are a variety of different pain medication types for different medical issues. Often they come with side effects which can be worse than the pain and often they may not do much to reduce pain.

Unfortunately I cannot take most pain medication safely, and that is common in my family strangely enough.  Opioids give me severe nausea to the point every part of the flesh feels like retching itself away from my bones (as in violently throwing it up, not just wrenching away although they do sound similar).   Non-steroidal anti-inflammatories, NSAIDs, do nothing for the original pain, add much more pain to the gut (like acid in all the wrong places), and knock me out like the most effective sleeping meds.  Bad if you need to be conscious and not as useful as it would be the worse sleep due to increasing pain, and waking up in pain frequently.  Tricyclics don't do anything much at all, but at least there are no huge side effects like the others.  They are only useful to me in so far that they can reduce anxiety a little bit, much less than owning a cat so not worth the cost.  Triptans also do nothing for the pain but come with even more negative side effects.  Seriously I can have more serious and severe reactions to pain medication than the original pain itself so I am left with few options.  I need to handle the pain and work through most of it.  Even the most effective pain meds with the least negative side effects I use only when severe pain is hampering conscious thought and the effect of them is like a feather being lifted off.  Not a lot of help at all.  Perhaps only enough to blunt the knife like stabbing, but I know those meds when used infrequently will not affect me long term.

Grading your pain can be subjective so it is good to identify with a doctor where you are on a standard scale... Even then they can still have bias towards your answers

Also doctors are increasingly adverse to prescribing pain medication or listening to pain scores from women & certain social groups.  They may discriminate against your statement of pain, (usually framed in the scale of 1-10), if you take any pain medication for it, or often even if you don't.  They will be less likely to provide pain medication, or any treatment to me when it is so incapacitating that I am on the floor and unable to breathe adequately, (screaming silently in pain due to not getting enough air).  However for my husband they will shower him with opioids & strong pain medication for something he can quite easily ignore to the point we are the ones suggesting a limit to the scripts not the doctors.


This implicit bias affects many people.  They probably though don't have the luxury of seeing the difference in medical attitude right there in the same appointment next to them.  My husband and I often have our medical appointments together to act as each others advocate so we can visibly see the difference right there in the same session as the doctor turns from one to the other.  One doctor even ignored everything I said for a year & did not bother to take notes for me while I was so sick I would be barely able to work & needed my husbands help to walk but would diligently record & make referrals for my husband for minor twinges that we thought we should note as part of regular status updates.  We are more used to seeing bias though, for years my husband was told his muscular dystrophy was in his head or he was on drugs, all while his muscles were deteriorating to the point he could no longer run.  It took another set of doctor changes to find one that even listened to him & send off for genetic tests which confirmed his FSHD.

The difference can be striking, depressing, cause cognitive dissonance as you trust the medical professional to be professional & without significant bias.  Unfortunately for many they cannot do much about the doctors reaction.  You cannot completely remove someone else's bias and often cannot afford second opinions.  Even a doctor change can be fruitless.  We have run a gamut through over 10 so far in the past few years.  Some have lead to deadly situations where internal organ bleeding, overdose & death is on the line (we switched doctors due to distrust in someone not checking for counter indications or dosage), some have even just been apathetic about their work.

When doctors rely on certain methods for patients with severe chronic pain. Picture by axelpfaender

For me the complication of my medication complications just adds to the fact that when I do desperately need help, and do finally find a medical professional who understands pain management, and they do decide to prescribe something they likely will just be inclined to the pain medications I cannot take.  Upon which on finding opioids & NSAIDs are not advisable for me they will just be struck dumbfounded as if they have lost the keys to the car and are struggling to search through foggy memory.  Many doctors have used opioids and NSAIDs as a catch all cure for pain.  When in many cases treating the cause of severe pain & helping manage through the effects needs more than a regular medical script and hundreds of dollars wasted in medical bills for off the counter medication.

Getting a medical advocate even to help with communication & taking notes when you are seriously ill in medical appointments can be a big support.

In essence the best step in regards to medical aid for pain we can do is to learn as much about the likely triggers, warning signs, levels, building & understanding our tolerance, potential medication (which includes reading the data sheets, chemical & medical research), etc.  Also it is immensely helpful to have an advocate who we trust completely available to help in appointments where it will be difficult to communicate with a doctor.  We take notes during appointments to remember key terms to say to a doctor.  To frame things in the manner they are more familiar with.

Especially check on anything doctors & specialists suggest for prescriptions and double check the dosage is right for us.  We have lost friends to prescribed medication, almost lost ourselves, so now we do not implicitly trust prescriptions simply because of the guise they wear.  Do not assume a pill will stop the pain but equally learn to recognise when things get serious to ask for help.  Where any relief or treatment can mean the difference between writhing in pain on the floor with difficulty in breathing to being able to sit up with some functionality and mental acuity.  Sometimes pain medication can help but equally much of it will have side effects and counteractions with other medication.  My husband and I try to accommodate more pain to build up a tolerance without medication to save it for when it is really needed and we cannot work through it.   

Hello,
Is there anybody in there?
Just nod if you can hear me.
Is there anyone at home?

Come on now
I hear you're feeling down
Well, I can ease your pain
And get you on your feet again

Relax
I'll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain, you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can't hear what you're saying
When I was a child I had a fever
My hands felt just like two balloons
Now I've got that feeling once again
I can't explain, you would not understand
This is not how I am
I have become comfortably numb

I have become comfortably numb

O.K.
Just a little pin prick
There'll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it's working, good
That'll keep you going through the show
Come on, it's time to go.

There is no pain you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can't hear what you're saying
When I was a child
I caught a fleeting glimpse
Out of the corner of my eye
I turned to look but it was gone
I cannot put my finger on it now
The child is grown
The dream is gone
I have become comfortably numb.
 

Thursday, August 9, 2018

A Break In The Clouds

A mist lays across Muriwai running up it's black sand dunes to the fields beyond. 


During a brief moment of clarity & ability we travelled to the west coast North Island black sand surf beach Muriwai.  A lot of beaches can look picturesque but the rocks and waves are dangerous.  Lately more people, new to the area, are taking risks on the beaches, and during a recent fishing accident 2 people lost their lives.  A family had gone out fishing with their kids off the rocks, the father was swept off by a wave and the mother pulled in after him.  There was a recent blessing ceremony from the locals, rescue staff, & iwi by the beach and another from the Buddhist community.  The weather can turn quickly here, the rocks jagged and slippery.  Volunteer lifeguards put out flags for swimmers & junior surfers on good days.  There is still surfing out during high winds, even during mild hurricanes.  But it is not a forgiving area and the locals know this well, including the local gannets.

 Life can be both fragile and indomitable.

The gannets nest and ride the winds around the cliffs.  You can see their nesting spots they come back to claim each year, waiting to see if their mates return to join them.  We watched them dive & scan the ocean for fish.  Then they would rest on the waves in a group together before launching to make the journey back up the cliffs to their nesting spot.  It can be rough as the gannets face a lot of risk most the year travelling around NZ and Australia before returning for nesting season.  Especially as recently a lot of sea birds have been dying  from dehydration & starvation due to the warm La Nina weather conditions & changes in fish stock.

In before the spring rush picking a good nest spot & tidying it up is imperative.

We could not stay long.  The recovery from hubbies brain injury is slow so his energy wore down quickly.  But at least he had enough time to eat his hot steak and cheese pie.  Feel & taste the fresh sea air.  While I got to take the photos in this post.  I prepared to drive us back with singing breathing exercises to stay focused & keep my mind off the pain.  I am the sort where I got used to doing maths tests with migraines as a teenager, i.e. stubborn wanting to complete a task, through pain, through nausea and if that includes a physical punishment later I pay the price.  It has been a lot to adjust to with chronic fatigue.  ME is a thousand times worse than any migraine and with continuous effects, gut, allergy, flu symptoms, even multi day migraine symptoms and orthostatic intolerance issues so I have to do regular safety checks and be fully certain of my condition & mental acuity.  If I am too far gone to drive, eyesight affected or hands & terrible fatigue it is a no go.  We have backup plans in place, lots of hydration & rest ahead of any planned trip so I only head out on days where I almost approach normal and only for short trips.  The energy never lasts and the punishment can hit like a goat to the groin.  We travelled back on the busy state highways peppered with wineries, farms, orchards and lots of trucks.  Nice drive but it hit me really hard afterwards, with a couple days of a really bad flare.  I had difficulty sitting & speaking and hand control was affected.  Pain intense.   I think it was worth it.  These moments may be fleeting but they are the light coming through the clouds after the storm.

As if hanging by a thread trying to get home.

Lyrics from "Till The Clouds Clear" - Lamb

What's left to say with all that's come and gone
Words get in the way
And anyway the devil's got your tongue
And the storm brews inside
And there's nowhere to hide
It's gonna blow your cover sky high

If you let this thing go
It's gonna burn, it's gonna burn
You're gonna take the whole world with you when you go

What you gonna do?
When the storm takes over
What you gonna do?
When the storm takes over

So here you are,
demons screaming in your head
You try to shut them out
But they just get louder instead
And nothing you do
can seem to break through this darkness smothering you
when it takes hold your heart turns cold
your very soul sneaks out of you

What you gonna do?
When this storm, this storm takes over you
Can you hold this thing?
Can you hold this thing?

Till the clouds clear

Tuesday, August 7, 2018

The Man Who Sleeps With Both Eyes Open


Metallica kitten "sleep with one eye open, gripping your pillow tight"
Sleeping with eyes open sounds weird but for us it is old hat and a real bugger.

Have you ever been shocked awake out of sleep with someone panicked and worried if you are ok?  Or how a good nights sleep feels less refreshing & leaves your eyes dry and scratchy making you more irritable?  What often happens with FSHD is that for many people they cannot close their eyes while sleeping.  Not entirely unusual, there are many medical conditions that have this.  Even with almost wide open eyes.  Often my husband will fall asleep like this where the only detectable sign he is asleep is a snore or unresponsiveness.  Well that and the tablet he may be holding to read or watch slips out of his hands without notice.  While sleep meds can help someone go to sleep, or stay asleep, they do not ensure that sleep may be entirely refreshing or in terms of the eyes beneficial.

The Simpsons shot of old man yelling at cloud
Some mornings even the daylight hurts and you can be forgiven for being annoyed at the pain.
 
Hence the name Mr & Mrs Grumpy.  Not just grumpy but Mr/Mrs Grumpy.  It can be really terrible when sleeping difficulties, breathing difficulties and pain team up on you, often when you desperately need to rest.  For anyone they will be irascible when undergoing those conditions long term and when living with people they will, even unintentionally, direct that irritation in response to the people around them.  Patience is a big key, along with recognition.  However the recognition and patience must be a two way street.  As my partner and I share sleep, breathing and pain issues we end up both experiencing a bad morning often.  Sure we have occasional morning arguments like every couple has about who didn't flush the toilet, or put out the trash, or responded to a question with a slightly more inflected tone.  We can end up having arguments by bouncing off each others mood and unintentionally upping the ante, even without meaning or wanting to.  But by now the arguments become fewer & just the grumpy tone is left on many bad days.  We have gotten better with dealing with some pitfalls.  Yet even on bad days any contact can be painful and leave you wanting unconsciousness, just to get away from some of the pain, (even just to pause it for a short time). 

The scene from the movie Pi where the lead demonstrates migraine pain with a powerdrill
In the movie Pi the lead suffered terrible migraines, I think they captured the feeling quite well.

So as another key to patience the next big thing is the word 'sorry'.  Great sometimes even used at the beginning of a reply to preempt when we know we are having a bad morning.  I know what I say will sound grumpy like I am possessed by the stereotypical grumpy old men who found the footpath outside their house filled with teenagers... on skateboards.  Especially good if we are really dazed to start the day with FSHD or ME symptoms and in a lot of pain so our response may be more croaked out instead of spoken.  Sorry, please sound down, loud.  You may also notice words, grammar and sentences can get clipped down to less physically & mentally arduous levels.  I end up doing it more for pain & neurological speech issues where forming a single word can be the challenge of lifting 50kg in one hand.  Like the mind is fully focused on it but it feels like that part of your brain has nails in it, or completely disconnected so trying to do or access what can be a simple skill like speaking just no longer works.  In scuba diving divers use hand gestures to convey even complex concepts & discussions.  It helps when you can recognise the other person is in pain & can read their unspoken messages patiently.  We help each other in anyway we can, even if that means leaving them in a dark room to work through the pain at odd times.

A Father Ted eye chart with some of Father Jack's favourite words, feck arse, repeated
We had 20/20 vision, but during rough flares our sight often has blurring, auras, delays, etc. But these things can change suddenly or gradually. Permanent damage can creep up when not looking.
Where the eye chart comes from? Father Ted  "Slovakia's premier lens manufacturers"

But sleeping with your eyes open does not just make them dry, scratchy, your sleep less refreshed, painful and more irritable.  What we found out recently was the distortion caused by the moisture differential over time was distorting the vision in the eyes.  Years of this caused the vision to become more blurred and my husband could no longer read as well in short distances.  Suddenly text he could usually read from 10m away now could no longer be read even when held in front of him from a couple meters.  The blurring got so bad it became painful to work coding, constantly trying to focus the eyes.  It was time in his 30s to get eye checks usually only those decades older address.

retinal scan image
Interesting look inside an eye producing almost artistic views which can get hard to focus on.

He even got to look at the scan of the retina where they look for serious eye diseases including glaucoma, macular degeneration and retinal changes that may be associated with diabetes.  $500 and two weeks later and we had a pair of prescription glasses with tailored lenses.  The difference was noticeable.  The headaches related to the sight blurring during reading reduced, and after getting used to the glasses they mostly stopped, (he still had a host of other headaches but the sight related ones were clearing up).

Father Ted joke advertisement about crows stealing pensioners glasses
Yep we lost a couple of glasses so far to the mysterious crows... named falls & lost.

Going forward not only are the glasses required, but also gels, drops & eye masks for every nights sleep.  Finding a good mask appropriate for the task is not always easy.  Most are designed with the assumption the eyes can mostly close as well.  So the linings are bad for contact with eyes and quickly become unsanitary or move around too much.  Ideally something we could regularly clean & disinfect like a form of durable plastic, similar to the gel ones used for cooling but with a better cover for blocking out light.  It is hard & expensive to start the habit of glasses, gels and masks.  They often don't make it into the budget & get rationed.  But now they are a necessity none the less.  There is no question about it.  We must adapt to counteract the issues with eyes open.  Plus we regularly check in on each other, especially when breathing is problematic.

Thursday, August 2, 2018

Managing Expectations, Bias and Blog

Perspectives of an engineer facing disability 

Firstly I welcome your opinions and perspective with all good intentions at heart. Other people's views of even the same situations or different ones have emotions which can ring echoes in others.

an incredibly bland cliche forest path meditation picture that could have come from an Enya video
Generic meditation picture scraped as if skimming off what floats to the top of meditation sites. Many people find this calming, I find it prosaic. I would much rather be walking down the path.

This is not a self help blog, it is not written to talk about how the magic of mediation & diet du jour will cure everything, (it never does cure the difficult diseases).  This is a documentation of parts of the journey through disability and illness; the scenic spots, tools and pitfalls.  Both my husband and I come from engineering and science roles, we also have family with medical backgrounds.  So we are more familiar with journal articles & in depth research than we are with popular icons and media.  We enjoy reading, art & games as much as, when we were able, tramping, kayaking, surfing, fishing, scuba diving, and martial arts.  So while we can certainly sound bookish we enjoy the outdoors as much as anyone.  Our journey may be different in our approach to many people.  Often now highly divergent to most people as our minds are our castles which we build upon unlike the physical barriers we face now to build our own home. 
a list of cognitive biases separated into several groups, too small to read without a higher resolution picture
 
Cognitive Bias Codex too small to read without zooming in real close. Or check out Wikipedia's List 

I will admit that there will be some form of bias in what I write, especially as it is a personal subject. Everyone has a form of bias.  The human mind builds upon it, often even unconsciously, using it as a foundation.  I have included above a picture detailing some forms of cognitive bias which are used in how we view and perceive the world.  Common ones in science can be optimism bias, survivorship bias, Occam's razor, placebo & nocebo effects, confirmation bias, the black swan effect etc.  Some are more humorous like Murphy's Law, or Hanlon's razor "Never attribute to malice that which is adequately explained by stupidity".  None the less when approaching a personal story or research I find identifying my own bias aids in recognising the perspective from which I analyse the information.

 picture of the Monty Python's lumberjack skit
"I'm a lumberjack and I'm ok, I sleep all night and I work all day. I cut down trees, I skip and jump, I like to press wild flowers, I put on women's clothing and hang around in bars" - Monty Pythons

Will I like this story?  When so far it has started from point of disability and looks like it is not getting out of it any time soon.  Well who knows.  My view is that while I am not depressed, many people see it as a depressing situation.  Let it never be said there can be no moments of humour & joy in such a situation to balance moments of anger, pain and grief.  Isn't that what many people on their paths face as well.  As I said this is a journey two lanterns take together as brightly burning stars.  If it serves to help or entertain others then that is a boon.  I rely on evidence based, scientific medical treatment, but many prefer to view chronic illness and diseases as something else.  My husband had to fight for his genetic diagnosis of FSHD muscular dystrophy as many untrained non medical opinions did not believe the muscle degeneration & issues were real.  He finally hit upon a doctor who did not judge him for how he dressed & looked like, this doctor & specialist referral got the genetic tests that confirmed diagnosis.  Hence it requires specialist medical knowledge and not opinion to diagnose complex medical issues.  Many family members with MS & other auto immune conditions were treated shamefully because it takes time to develop clear diagnostic tests and then for the patient to work through the system, (women prior would be tossed into mental institutions or ignored until it got too late to effectively treat).

We all perceive the world differently, for some it is turtles all the way down.

The following anecdote is told of William James.  After a lecture on cosmology and the structure of the solar system, James was accosted by a little old lady.

turtles all the way down
"Your theory that the sun is the centre of the solar system, and the earth is a ball which rotates around it has a very convincing ring to it, Mr. James, but it's wrong. I've got a better theory," said the little old lady.
"And what is that, madam?" inquired James politely.
"That we live on a crust of earth which is on the back of a giant turtle."
Not wishing to demolish this absurd little theory by bringing to bear the masses of scientific evidence he had at his command, James decided to gently dissuade his opponent by making her see some of the inadequacies of her position.
"If your theory is correct, madam," he asked, "what does this turtle stand on?"
"You're a very clever man, Mr. James, and that's a very good question," replied the little old lady, "but I have an answer to it. And it's this: The first turtle stands on the back of a second, far larger, turtle, who stands directly under him."
"But what does this second turtle stand on?" persisted James patiently.

To this, the little old lady crowed triumphantly,
"It's no use, Mr. James — it's turtles all the way down."